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Monday, August 10, 2009

Not the News We Were Hoping For .....

I am a bit numb.Don't know how else to say it except to say it.Writing that sentence is reminiscent of the exact words I wrote when Zoey was first diagnosed with Leukemia but here we are once again entertaining the unimaginable.I won't and quite frankly can't replay the entire day.The basic deal is this:Wednesday we will be having a bone marrow biopsy to eliminate or confirm that Zoey's leukemia has indeed returned.Numbers aren't exactly on our side.Mainly her platelets.To give you an idea,two weeks after Zoey was released from her final round of chemo,her platelets were 277,000.Today a whopping 99,000.Lay mans terms:that completely sucks.I should have known the day was not going to hold the best, as we were ushered into the very room,out of ALL the rooms,the very room where we received the initial news of Zoey's diagnosis.Mark had come by before work and thankfully he was there with me as I just basically said to the doctor"You have got to be freakn kidding me?"and I walked out the door.I returned but wished I didn't have to.I really wanted to just swoop up my baby and get the hell out of there.Sorry about the language but a little known fact to some,my mouth,when I'm upset is to rival a truck driver.And I am upset.I am sad.I am scared.I am completely and utterly confused as to how much one little child should be asked to endure.I will go over it one more time for those who have missed Zoey 101:Down syndrome.Hello??Most people are stuck on that.Not us.We chose life and we embraced it and the Down syndrome thing was and is totally secondary.Actually today,it is far,far down,in fact,dead last on the list.Okay recap continues:Stroke in-uetro ... my 71 grandmother had a stroke.My child?Ok,we'll deal.Transient leukemia .. in a newborn,ok,we'll deal.Major heart defect with a side of pulmonary hypertension ... check we'll go with that one.Infantile Spams ... hold up.Don't want that one.It's nasty but you say we have no choice,ok,we'll figure that one out too.Then the bigger guns come,full blown leukemia because Someone wants to see just how close they can push me to the edge before I break.Took that one and we and MOST especially Zoey carried that load and showed them who was in charge.Well... Someone thinks it might be nice to keep this roller coaster going and I for one want to get off.RELAPSE.OH NO,NO,NO!!!!Hold up and and hold on because now I'm pissed.But hey,who did I think I was.You have all seen it here.PRECIOUS,PRECIOUS little lives dropped not only into the world of pediatric cancer but then as a chaser let's throw in relapse and recurrence.Today I came home and opened my garage and cried because once again I feel like life is about to change.I don't want it to.I love my life right now.It is perfect and it has Zoey in it.I cannot lose her.She is my side kick ,my buddy,my inspiration.She is what we have all waited for all of our lives.Didn't He get that memo I sent.We need her.She represents all that is good.She represent the best of all of us.I got home and made my rounds about the house.Picking up having been gone all day.Putting laundry away.Going through the motions.Watching my boys play innocently and carefree and wondering all the while, is their little live about to blow up again?I watched Taylor cry and say that if Zoey has relapsed she is not going to college in a few weeks.I listened to Jess,our first born act as if everything was alright but knowing my strong firstborn keeps it all in.I talked with Caitlin.I talked with Caitlin about something no mother should ever have to talk to their child about and that was about the potential lose of their sibling.I told her and I'll say it again.If Zoey has relapsed I WILL NOT PUT THAT CHILD THROUGH ANOTHER THING.NOT ONE OTHER.I watched my husband keep it together,for me.Hold Zoey,his little girl,his daddy's girl that he finally got and I watched him choke back the tears.No one should have to go through this.No one.Most especially a beautiful little child.That's all I got.I will let everyone know how it plays out on Wednesday.My girlfriend called me when we were waiting on a second set of numbers and she said,Heather just pray.I do not have it in me.I just don't.Please do it for me.For Zoey.

85 comments:

I am so sorry. Please keep us posted and know that people are praying for sweet Zoey.

My aunt Kim was a DS heart baby...one of the youngest babies in the country at that point (1970) to go through open heart surgery. She was diagnosed with cancer at age 13, and sadly it was found way too late.

There are many more who beat this horrible disease, though. If anyone can do it, it's your strong baby girl. Keep the faith.

I am so sorry, sweetheart. We are praying for you and your sweet family. I can't imagine how hard this is for you. I know words don't do much but I want to tell you you are such an inspiration to me of strength, and Zoey is a light, an angel. Hugs to you all, and prayers!!

Oh my gosh. Not what I was expecting to read. Hold tight to the Carly issues with low platelets. Her's were much lower than Zoeys are now. We did the bone marrow test and no leukemia. No abnormalities in the cytogenetic test either. Hold tight to that. I could be another curve ball that Zoey is throwing to the doctors. That's what I'll be praying. That its just a curve ball.

We are praying for Zoey. For you and the entire family. Don't give up just yet. You have a FIGHTER on your hands. Believe me, I know just how you feel. She should not have to be a fighter. Thank God that she is though.

My heart is breaking for all of you, especially Zoey. What is all this about? There is not one ounce of me that can make sense of this...why, why? Please know that we are all out hear holding you up so you can take another step. Please let us be there for you.kathleen

interceding on Zoey's behalf right now. There are no other words that I can give you that would even begin to comfort you. I am lifting up your big girls as well. I will choose to believe in abundant life for Zoey Grace. Kelly Kile

Needham warriors-please know that you are in our prayers. Totally numb right now. We are all together on vacation and we are all numb. Please know we are lifting you up in our prayers. Love you lots. Hugs to the princess!! ( they seem so inadequate but it's all I have. Christy Erik Jake and Carla Pinuelas.

Heather, Can't get you out of my mind tonight. I realize that Zoey and Carly had different types of leukemia, but I recall soon after Carly's treatments, her platelets took a nose dive to about 107,000. Her platelets were rarely below 280,000. Even throughout much of her treatment. The doctors told us that this happens sometimes. As their tiny bodies try to bounce back. It's almost like their bodies are at a loss. Kind of like they're not sure what exactly to do now that chemo is gone. Keep the Faith Heather.

ok..expecting to see some more sweet pictures of lil Zoey..and to smile to myself..instead I am lacking in the tissue department and wiping my tears on my shirt..I am praying so hard for YOU to stay strong and for Zoey to keep her smiles goin..thru thick and thin..It seems as if no matter what the special needs of our little angels we still manage to wake each day and keep going. I too am faced with a scary thought that my madies Infantile Spasms may have returned into our world.. Ok so not quite the same..but an equally devistating diagnois if you ask me.! Oh lots of hugs...via satelite from CT! (((( big squeeze lil Zoey))) I have no more words...I am just shocked.....:(!!

Oh Heather. I don't know what to say. I'm sick at my stomach and still in total and utter disbelief. Maybe the biopsy will come back OK? You will be in my constant thoughts and prayers. Please call me if you need to talk. Sending you all my love.Tera

I am just sick for you, Mark, the kids, especially for little Zoey. I am so very sorry to hear this news, and I am sorry you have to wait for more results. I don't know what else to say... I can't believe this.

*Please* let me know if there is anything at all I can do for you guys - I'd be happy to take the boys whenever. Really.

Oh my goodness Heather, I can't even believe. We understand your fear. We will be praying harder than ever. Praying for good news and good numbers. Praying for strength and most of all praying for peace.

Mrs. Needham, I broke down in tears when I read this. I am praying for you and Zoey and the rest of your wonderful family all the time and I hope to God that everything is ok. Zoey is a fighter and is an inspiration every day. Alessandra

I will be praying for you Heather! My heart breaks for you and with you! Know that many are praying for you and your sweet girl and know that God knows your heart and hears your needs even when you don't have the words or energy to pray! May He give you "peace that surpasses all understanding" as you fight this battle! Love, Hugs and Many Prayers!!!

Heather I am crying mad/sad tears with you. I cannot believe this either. I am praying that the low platelets don't mean anything and the biopsy will be normal. You are covered in prayer and especially sweet Zoey Grace.

Oh, Heather, I have sat here for about 40 minutes with a loss for words. This is not the news I thought you would hear today...I am hoping above all hopes that this is just a curveball... and not a relapse. Zoey, by virtue of her given name means life...she will continue to fight, it's in her nature and a gift from her mother's genes! :) We will all stand in the gap for you and pray unceasingly for this beautiful child!

Heather, I am so sorry that I am in another state right now. You know that I feel your pain as I was just in your position (albeit not on a relapse basis). All I can say, is to just remember that both Ella and Carly (ABC's) just recently had low platelets and their bone marrow came out fine. Hold on to that for now because as you told me....don't worry about the worst until you have to. Zoey is a fighter, no doubt and I promise to send prayers up from TX!!! I may try to give you a all if I get a minute tomorrow and as you told me, answer if you want!!! My love to all of you.

I am another stranger praying for your sweet, sweet baby girl and family. I went to meet Tera and Reagan a few weeks ago, and I told Tera you and Zoey were next on my list. I have been following your blog for months silently.

I am reading your blog with tears running down my face. I just can't believe the news. I am so sorry to hear it. Please know Zoey is getting many, many prayers from our family.

Heather and Mark, when your arms are tired from rowing we row for you. Loving prayers sent ceaselessly. Knowing the test will show no relapse. I'm glad to read what the others have posted to you. We're here for you, you can't shake us. I hate this. Back to warrior status. Loving arms around all of the Needhams, Christi Harman

Prayers & hugs. You don't have any way to know that I have been following your blog for several months now. Praying for your precious family. Zoey has taught me so much in those months, as you have, also. If I could, I would reach out to you & embrace you, give you a shoulder to lean on. Beckie in TN

Heather, Im speechless.I have not visited your blog in weeks and something told me to check in tonight.This is the last thing I expected to read.I just sat back and sobbed.I cant even begin to know the pain and fear running through your mind.This is so unfair.All I can offer is my unwavering support,love and prayer to you,Zoey and your amazing family.Prayer is powerful and I will pray every second of every minute for those numbers to read rite.Much love,Helen

Oh My! Kristen is about 2 months ahead of Zoey as far as AML treatments go. She has blood checks every month and her platelets have been low every time. She finished treatment march 30th and her platelets last month were only 120,000. They were higher than that between her rounds of chemo. We have clinic on Wednesday and I am hoping to see better numbers. Hopefully Miss Zoey is just being slow like Kristen. I know exactly what you mean about Zoey being your sidekick and buddy. Everywhere I go Kristen is right there with her arm in mine. I love it! I feel naked without her by my side. We will be praying and anxiously waiting the results.

Heather this is Joyce. I am so glad Miss Sarah is not here to read this with me. My heart is breaking for the pain you are feeling right now. I am praying for the numbers to be meaningless. I am hoping there is another explanation. Hold tight, pound the walls, scream if need.

Praying for Zoey and for all of you right now, praying hard that the results come in o.k....Zoey is a fighter, I know its just not fair but please please don't give up. She will come through this time just like she has done each and everytime before. Its really not fair that an innocent little child has to go through so much, its so cruel and my heart aches... but keep the faith and Zoey will show you the way.My continous prayers are with you...

There really isn't anything I can add to the wonderful comments (support) you have already received. But just know that my prayers are being added - for Zoey, for you, for the whole Needham clan. Stay strong. We are with you.Michelle

I'm taking a little comfort in other blogs that talk about low counts, but no relapse. But mostly, there will be prayers, prayers, prayers, from our household...for Zoey...for the Needhams. Rest in the arms of all those who are being your prayer warriors 24/7.

Wish I could still pray. If I could, you bet I would, that news is just awful. All I can do, in my own limited, stupid way is let you know all my hopes are with Zoey, they really are. I think of her often.

I wish I had more to offer than that, but you know how it goes. We see each other on these things, read about each other's pain and anguish and do the best we can to prop each other up.

Generally, I fail miserably at this, because I am always at such a loss for the 'right' thing to say, today I am failing a little worse than I normally do.

Heather,God has everything under control. Zoey is in good hands.Platelets can drop down with out us being able to figure out why. They dropped to 70k for me around Day 128, if I remember correctly. But they are back up to above 200k last week. Blood tested this morning, getting the results at 4:30 this afternoon.I cried reading this post. I can't imagine what you are going through. You are in our prayers.I don't like the bone marrow biopsy procedure. But I have old hard bone, Zoey has young tender bone. I pray that it doesn't hurt for her and that you get good test results. God bless you in this Storm!

I read your entry yesterday and wanted to comment, but didn't know what to say. I am just so heartbroken right along with you. At church on Sunday Zoey was so happy and smiley, and I remember thinking how healthy and good she looked. I have shared Zoey's story and prayer requests with many friends, family, and even work (the benefit of working for a Christian company!). Please know that you have many, many people lifting you up in prayer right now.

Take comfort in the words of Isaiah 41:13 as well:"I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

Prayers, mojo, positive thoughts and everything else are coming your way!!! My heart breaks for you guys. She is a fighter and so are you (although you may not feel like it now). We'll all wait to hear how it goes on Wednesday. Hugs!

i know there is nothing that anyone can say that will bring comfort to you...just know that you are all in our prayers. i am so deeply saddened by this news and it's just not fair. it just plain sucks and i hope and pray so hard that zoey is not relapsing.

We will double and triple our prayers. Everything that Zoey has done has been in her own unique way. I am believing that her numbers are simply her numbers and that nasty leukemia is gone, gone, gone for good. I can't imagine how you are functioning, but know that you have a huge support system and all of our positive thoughts and prayers are directed towards all of you.

I am so sorry to read of the discouraging news. I am still hoping for the best. I have been keeping up with Zoey's story and I think of her often. Please know that many are thinking of praying for your little girl.

as if I hadn't cried enough today I stumbled upon your update...I'll shed a few more tears and I'll pray a thousand prayers. Lil Zoey is here to show us all that God DOES live and that she is perfect in every way and she WILL be ok! Ill be praying for all you guys!!!

Heather,I am heartbroken with your news. Please know that we are holding Zoey up in ALL our prayers constantly. Relapse was definitely the hardest word we ever heard, but know that the Lord is sovereign. His plan for Zoey is FAR greater than any plan we can have. I know it pains and hurts (A LOT), but know that we are with you every step of the way, but mostly, the Lord is with you and precious Zoey ALWAYS.We love you and will be praying!Malachi and the Smith Family

Heather, I feel sick about the news, so sorry. You and your family in my prayer. Hold on baby, GOD will get you though til wed. He is holding you in his arms and carrying you. FOOTPRINTS..... take comfort in that right now you are not alone, one day at a time..

I am Kele's friend and Presley's godmother. I've been in a place where I couldn't pray for myself...it is at those times that others prayed for me and carried me through. While you may not know me, I will pray.

I started reading your blog in November 2008. I can't stop thinking about your family and Zoey. Praying with intercession from Mary and saying a Novena tonight. My yougest daughter Ashtin (2) has DS and is also my side kick. Keep the faith, Diane

Heather, Heather (I had placed a phone call to Jessica before I read this blog). I am stunned beyond all reason. I will place a phone call to your parents Mark, they were not home earlier. Maybe you have spoken with them or your sister has read this and talked to them. Sorry I'm rambling on - can hardly see the keys, tears in the way.

Prays, prays are coming your way from eveywhere.

Oh, I am so sad at this news.But I must remember what a little fighter this little great niece of mine is.

Oh heather... I don't know what to say, because whatever I type will not come close to what im feeling in my heart for you and your family... Why.... why... I just don't understand... Please know I continue to pray for sweet little Zoey.

We love you Zoey and we love your Heather. All our prayers to you all to find strength. You are the most amazing people. Is there something holistic you can try with Zoey- macrobiotics, acupuncture, other therapies that are not as damaging or invasive and might offer some healing? I just want to hug you both.

I haven't kept up for a week and now I weep, first with fear and now with joy. Why are we not suprised that Princess Zoey can withstand all and kick butt in the process. She continues to amaze me and many others. And yes, a deckout motor home for all of you sounds wonderful, Wish I had one to lend you. hugs to alltootles, Dawn, Jim and Paul from Otisco Lake and now Winchester, TN

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Do it for Zoey and all of her fellow warrior friends.

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